The waiting and wondering are almost over for the Engholm family. The date is set. On Jan. 4 Steve Engholm receives a kidney and his sister Janis Dougan gives a kidney.
But not from and to each other. Another donor and recipient are involved.
It will be the first in-house double kidney transplant for the University of Washington Medical Center, with multiple teams of doctors and nurses needed to accomplish it.
“Instead of flying (a kidney) across the country, it goes down the hall,” said Janis Dec. 16 as she, Steve and sister Terri Harris talked about the long road leading up to this hoped-for remedy for Steve.
The Engholms are a family deeply rooted in Acme. For 17 years Steve drove from the South Fork hamlet to work at the Lynden Tribune where he became general manager of printing operations. But in 2011 his diabetes contributed to the first of three strokes that eventually forced him to quit any regular job.
In 2013 Engholm, 57, began the nightly 12-hour home kidney dialysis sessions that continue to regiment his life. “I haven’t been out of my house after 6 o’clock for three and a half years,” he said.
His name also went into the National Kidney Registry. Actually, it’s always two names that go in, of both the recipient and a willing donor, in order to try to get a match that will work. In this case, Steve has O-positive blood, meaning he must have an O-positive donor, but no one else in the Engholm family matches up in blood type.
For various reasons, Janis is the one “all our eyes turned to,” sister Terri said, when they considered who was best suited to be the donor of a kidney in order to get one for Steve.
Janis, 59, a bakery worker at Costco who has the support of her employer for this brave step as well as favorable medical insurance, readily accepted the challenge. She lives at Semiahmoo.
Of course, she would do this for her brother, Janis said. That decision was made years ago.
“Once you’re committed to it, that’s it,” she said. “When you get to this point, this far into it, you’ve already made your decision a long time ago.”
It was everyone’s consensus that Terri, “our resident angel” who looks after Steve and their elderly father Paul at Acme already, should continue to be in the caregiver role during the recovery phase after the transplant surgeries.
Two brothers will help with transportation and in other ways.
Steve has two sons. Jesse lives and works locally, is married to Samantha, and they give Steven two grandsons. Connor is in the Air Force in Colorado.
In October the call came. A suitable double match pair had been identified, and they were also in the Northwest. The transplants could be performed together in Seattle.
Their sense of just waiting and hoping to beat the seven-year average wait on the registry list was about to be over.
They say the wait has felt very long and arduous, often like one step back for every two steps forward or like one hurdle cleared and 12 more to go. It’s been taxing mentally, emotionally and physically, they say, and they have learned more medical details and made more trips to the Mt. Baker Kidney Center in Bellingham than they could have imagined. “I don’t know how many times I was told ‘this will be your last test,’” Steve said.
“We’ve pushed through a lot of walls to get here,” Terri said.
They relate an incident of last summer that amounted to a close call for Steve. He was on family property streamside to the South Fork when he had a diabetic reaction and passed out. He was laying in the water for 45 minutes before he was found and paramedics were summoned. He was fortunate not to have gotten water into his lungs or kidney port. His body temperature had dropped to 88 degrees and he spent two days in the hospital wrapped in a blanket.
Steve does sleep while undergoing nightly dialysis, with an alarm set off if any problems arise.
The Engholms do not know who the other donor-recipient pair is. That is standard protocol, although the opportunity to meet may come if everything proceeds as hoped with the double transplant and both sides agree to it.
On Dec. 15 Steve and Janis were in Seattle at the UW hospital and went through all pre-operation checks. “Everything went well,” they said.
The surgeon who will head it up has now done over 300 kidney transplants. That’s very reassuring. But Steve will admit he is “past the excitement stage and on to the nervous part of it.” Still, he said, “We’re ready to go.”
The highest priority right now as they count down to Jan. 4 is to stay fully healthy. Steve keeps his lysol spray close at hand. A cold, cough or fever among any of the four, whether donor or recipient, could put the operation on hold.
Post-operation, the siblings must continue in hospital care for at least five days, then should be in lodging nearby for up to a month more. When interviewed, the family was still looking at three options for accommodations, but they do know that they will need help paying for it, as it is not covered by insurance.
“It’s totally up to family and friends who can help,” Janis said.
A GoFundMe account has been created that tells the story to this point, and their financial need. It is at https://www.gofundme.com/234y8sk. The goal is to raise $6,000.
They feel very encouraged that many relatives and acquaintances from across the years — even “kids from high school” and via things such as garage sales — have learned of Steve’s need and have contributed.
“We call ourselves Team Engholm because it takes a whole following, definitely,” said Terri.
After being in Seattle, there will be twice-a-week trips back there for checkup, then every other week.
For those prefer to give by check, the Lynden Tribune (P.O. Box 153, Lynden, WA 98264) is willing to receive such gifts and forward them on to the Engholms. Make checks out to Steve Engholm.
References: A double kidney transplant awaits